Death, taxes and uncertainty

Brené Brown’s seminal work Daring Greatly starts with a recap on her own opening lines to a newly appointed therapist. Dr Brown was at the time doing a PhD in shame and vulnerability, and she started her first session by saying, “I hate uncertainty. I hate not knowing.”

As I listened to the Daring Greatly audiobook these words became imbued with a strange, India rubber ball quality, causing them to bounce about in my stomach for a bit. As regular dear readers already know, I don’t believe in coincidences. Which is why I’m not at all surprised by the sudden appearance-in-my-path of Dr Brown’s reference to uncertainty (and her well-documented aversion to it) when, once again, I find myself straddling the known and the unknown on this continuing Big Breast Adventure.

So here’s where we’re at. You may recall me saying that since the initial two years of pointy-ended breast cancer treatment (mastectomy, chemotherapy, radiation and a daily dose of the drug Tamoxifen) I’ve continued with monthly-now-quarterly blood tests to monitor cancer markers, notably CA125, CA15.3 and, more recently, CA19.9. In 2017 I’ve also had two of the ‘special’ blood tests to monitor the CDH1 genetic mutation that played a major part in my contracting an infiltrating lobular carcinoma in the first place.

Let’s deal with the last one first. My most recent test for CDH1 recorded much lower rates of the mutation in my blood stream – just above the thin red line the genetic lab gurus tell me is the ‘cancer line’. Above that line, you are considered a cancer patient. Below it, you’re not. I’m not below the line but I’m close enough to it for neither my oncologist nor me to be overly concerned about CDH1.

However, I’m afraid it’s not so rosy a picture with the cancer markers in the normal blood tests. All have climbed inexorably over the course of this year, particularly CA125 which now sits at approximately three times the recommended level. My trusty oncologist tells me that while CA125 is quite a diffuse marker (i.e. its reliability as a definitive indicator of cancer can sometimes be questionable) it is strongly linked to ovarian cancer and inflammation in the gut.

This is a particular concern in my case because I had an ‘infiltrating lobular’ type of cancer – a cancer that is slow-growing, likes to travel and likes to hide in hard to see places such as the linings of the tubes in the alimentary canal, for example. The addition of CA19.9 to my cancer marker monitoring regime has only added to the concern in this area because it too is an indicator of inflammation in the gut, specifically the lining of the bowel and the pancreas. This marker was close to its limit when we started monitoring it in February and the most recent test reveals that CA19.9 is now well over this threshold in my bloodstream.

But wait, there’s more. Over the course of 2017 I’ve been experiencing significant disruption in my upper gut, particularly the stomach and gall bladder. Reflux, heartburn and general discomfort in that area are now part of my daily and nightly round. My naturopath and homeopath have helped me throw as much natural stuff at this as possible while I’ve also added ‘gluten-free’ to my vegetable-laden, ‘sugar on the down-low’ eating habits. (As an aside, this dietary shift prompted my dear husband to give me a copy of Enid Blyton’s Five Go Gluten-Free by Bruno Vincent for my birthday. Ha-de-ha-ha.)

All of us on the complementary medicine side of the fence had hoped that this effort might be rewarded with significant lowering of the CA125 and 19.9 levels. Alas, the former only reduced by two points while the latter actually increased by five.

My oncologist then requested I go off and have a pelvic CT scan, a bit of a misnomer because they actually scan the entire torso not just the pelvis. But that’s a good thing because he wanted to see if there were any unusual growths around the uterus and ovaries as well as the bowel and upper gastric area.

I had these scans in early October and, to everyone’s great relief, they came back clear. But – and here comes that levelling ‘but’ again – at a follow-up appointment with my oncologist last Tuesday he reminded me that because the cancer I had is both lobular (read, slow-growing) and infiltrating (read, sneaky little sh!t), clear CT scans aren’t really worth the film they’re pictured on. At this stage of the game, the cancer cells that do exist are merely behaving badly. They’ve yet to form communities that become tumours large enough to register on even the most sensitive scans.

Nevertheless, these badly behaving cancer cells have been known to congregate in numbers too small to constitute a tumour but large enough to block ducts in the upper digestive tract, causing havoc with something as fundamental to life as eating.

In a bid to understand what my dear oncologist was actually saying to me and, quite surprisingly, with no pun intended I asked, ‘What’s your gut telling you all of this means?’ He answered honestly, as he always does, saying he believes there’s something untoward going on and we’d better get it checked out.

To that end, my entertainment in the coming week will include a visit to the Dee Why Endoscopy Unit where I’m booked for a scenic tour of my upper digestive area known as a gastroscopy, and biopsies of any tissue in my oesophagus, stomach and surrounding areas that looks weird. Gratefully, I’ll be asleep for all of this, fun as it sounds. Not sure when the results will be in – possibly before the week is out.

And so, right now, in this very moment, I’m standing smack bang in the middle of uncertainty on a scale that makes Dr Brené Brown and many of us I suspect, very uncomfortable.

While I may be sceptical about coincidences, I am however a great believer in irony. It’s ironic that despite uncertainty being a feature of an ex-cancer patient’s life (well, anyone’s life really) we humans continue to struggle for consistency, confirmation, surety and security in everything from wages and conditions to whether there’ll be enough electricity to power our air-conditioners this summer.

It’s also deeply ironic to me that Benjamin Franklin failed to include uncertainty in his famous assertion that ‘death and taxes’ are the only sure things in life.

And the final irony is that, despite having written a treatise on Friday’s Law of Detachment in Deepak Chopra’s The Seven Spiritual Laws of Success, it took me at least two days to remember the good doctor’s wise exhortation to ‘stay grounded in the wisdom of uncertainty, while expectantly waiting for a solution to emerge’. Chopra explains that if we’re spooked by uncertainty, there’s a tendency to force solutions on problems which mostly just creates more problems.

I know this to be true in my own life. Things that I perceive as problematic often resolve themselves in quite surprising ways if I just resist the temptation to try and ‘fix it now’.

So this is me, folks, stepping into Chopra’s beautifully described ‘wisdom of uncertainty’. I’m writing about it in this moment as a means of plugging into the wonder of not knowing while waiting expectantly for a solution to this current dilemma to emerge out of the fog.

Bless you for reading.

P.S. If you’ve just joined us on My Big Breast Adventure why not get your own copy of the book here?

Comments

Jen, it’s v upsetting to read this. You have been through a lot my darling and yet there’s still more. I think you must be right. We are not great at uncertainty and yet must remain patient and calm. I will be praying for this for you, Tony and beautiful children. Love and hugs Trish

Dearest Jen,
It started on Monday with a family birthday and a funeral on same day followed by an engagement dinner scheduled in a couple of days and now your procedure. Sounds like a movie! This has to be an example of a week to remember and a reminder to take joy in living and lots of laughter mixed in when it comes to uncertainty.
Sending many happy thoughts out to you from the gang down the road. xx

Jenny, you are one of the strongest and most inspiring women I know.
I love your outlook on life!
The way you embrace every part of life as an opportunity to grow, learn and better yourself. The way you then take the time to share your knowledge with others. Whether that knowledge is gained in good times, bad times or in uncertain times.

While you “stay grounded in the wisdom of uncertainty”. Please let the ‘certainty’comfort you, that your friends are sending you love, light and positive energy. May this help support you on this forever changing journey we call life.
xoxo

My love as always to you Jenny-Ren as you plough through all this uncertainty. The knowledge we all gain through your experience is so deep. You & your family deserve so much more
HUGE hugs my darling Jenny-Ren xox